Tuesday, July 2, 2013

Summary of 5th Appointment with Dr. C

I had my 5th appointment with Dr. C today. For those that don't follow my posts about Dr. C, he is one of the most respected ME/CFS specialists on the West Coast. And I say that, not to try to impress anybody, but just to make clear that Dr. C is not a typical PCP who knows nothing about ME/CFS. He is constantly researching it in the laboratory and publishing findings.

We first reviewed the fact that my experiment with the drug Rifampin had failed. If it had worked, I was supposed to experience a strong flu for several days--indicating that my immune system had kicked into gear--after which I would supposedly feel better. Instead, it just caused me to crash, starting about two weeks after I had finished taking the Rifampin. The crash lasted for about 3 weeks, which is one of the longest crashes I have ever had. Dr. C said that he has had a few other patients (out of more than 70 who have tried Rifampin), who have had these delayed crashes starting 2 weeks after the Rifampin. To be fair, I don't know with certainty that the Rifampin caused my severe crash, but I can't think of anything else that might have caused it.

With that, Dr. C admitted that he was "out of tricks." So to review, the first treatment we tried, Equilibrant, worked and continues to work. I still take 6 tablets of Equilibrant per day. It shortened my crashes and made them less frequent. While it didn't make the high's any higher, it made the lows less low and less frequent.

After that we experimented with a number of other drugs & supplements that Dr. C often prescribes in conjunction with Equilibrant, including Inosine, Amantadine, and Rifampin. The purpose is to trigger the patient's immune system into shifting back toward Th1. None of them worked. Dr. C concluded that I'm going to have to wait until we have better drugs to treat ME/CFS. Since I'm classified as "moderately ill," I'm not eligible for (nor would I want to take) more advanced treatments like interferon and IVIG. So I'm now on Dr. C's extended appointment calendar, where my appointments will be spread out by at least 6 months to give time for new research developments to happen in between appointments. Now my next appointment is scheduled in late December.

Dr. C stated that there is a well-known drug manufacturer who, within the last year, hired an enterovirus expert. He believes they are working on a drug that is specifically targeted toward RNA strand enteroviruses (which Dr. C says is the cause of ME/CFS). He believes, with time, an effective drug will be developed to combat ME/CFS, but how long that will take is anyone's guess.

Another thing that struck me about our discussion is that Dr. C is absolutely, 100% convinced that ME/CFS is caused by an enterovirus, and he seems to have a small chip on his shoulder about it (in his own, understated way). At one point he said that he has proved that enteroviruses are the cause of ME/CFS and he seemed almost exasperated that the rest of the ME/CFS medical community hasn't fully recognized his research. This will be interesting to follow...

Finally, our appointment concluded, as it always does, with a quick physical examination. Dr. C noted that my left lymph node is swollen. Swollen nodes are of course common among ME/CFS patients, but I no longer even notice it. He also noted that the left side of my tongue is swollen in the back, also the result of immune system (Th2) activation. Since I was feeling pretty decent today, I was a little bit surprised by this. It was a good reminder that even when I'm at my baseline and the only symptom I have is fatigue (like today), there are other symptoms that can be physically observed by a doctor even if I no longer even notice them. I have simply gotten used to living with these discomforts and they are now simply a part of life that I hardly pay any attention to.

7 comments:

Patrick-Curious if you asked at all about vyvanse with Dr. C. Saline IV's are another one that I see people getting for temporary relief. Like you, I am at the point of treating the symptoms for now until something medically breaks. The entrovirus theme seems to make a lot of sense, especially to guys like us who had this all start with a flu like illness. I continue to be in disbelief that coming down with the flu would be the start to a whole new chapter in my life. Still confuses me to this day how it could have impacted me like this when it seemed fairly benign.

Hi Bret, Dr. C tends to be so narrowly focued on Equilibrant and his few other treatments that I knew it would be no good to ask him. I am going to ask by other doctor, Dr. W, when I see him. He would be the one who would more likely know about vyvanse.

What does the saline IV do? Do it just help with increasing blood pressure and blood flow? That would be nice for some temporary relief as you said.

That seems to be the benefit of saline, just as you said. I read about a soccer player who came down with a mild case of CFS but was able to compete by taking these before his matches. I have googled this and there are many people who claim this gives them a few days of relief. Not sure on the cost, but my doc said it is benign and in the "why not" category. Even if it gives a few days of temporary relief it would be worth it to do before planning an outing or weekend trip. I will let you know when I have this, and the results!

It's good to know that there are potential options for times when you absolutely need to have a boost that you can rely on...like for work functions and such. If you try the saline injections, please let me know how it goes.

Thanks for the continuing updates. I'm sorry to hear Dr. C feels like he's out of tricks - hope there will be some new ones for you (for all of us) soon. And the assurance about his personal findings sounds familiar...my Dr. C in the east, while he admits he doesn't know the cause, is very definite about the downstream findings he has made. Maybe it will turn out they're both right. And oh, how I know about the disappearing symptoms...I have dozens, but I'm so used to them that I only really notice them when I'm put in a situation that reveals them. At home it's just perfectly normal to lie here in a quiet, darkened room with dozens of pill bottles at hand! -Jocelyn

Hi Jocelyn, good to hear from you as always. That is interesting about your Dr. C's findings. He is a fascinating guy and I think he may be one of our top prospects for making a huge breakthrough because he's not only very smart, but he's a creative thinker and it seems like his mind never stops working. I want to learn more about these "downstream findings" since I haven't really kept up on the latest findings of your Dr. C. Where can I read more about that?

Thanks for the personal support re disappearing symptoms. Hope you are doing well.

Hey Patrick, Jocelyn may have gotten back to you regarding Dr. C, but if not I wanted to tell you that Dr. Cheney did a conference recently that was recorded and is on youtube, the first video is here: https://www.youtube.com/watch?v=dHO6-q6WGT4

It is fairly long, so I wrote a summary on my blog at http://mdwme.blogspot.com if you are interested. I haven't had the strength to write anything since then, but hopefully that will change eventually.

I am sorry you passed your 2 year sick-iversary as you called it... I know that has to be disheartening. I know a lot of people reading this have been sick for much longer, but I am just a little bit behind you, and when one year passed without any real improvement that was pretty disappointing.

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DISCLAIMER: I am not a doctor and have no medical training. Nothing in this blog should be construed as medical advice. This blog simply recounts my personal experiences and, at times, summarizes research from other sources. I can't verify the accuracy of these other sources. Never rely on anything you read here in making your own medical decisions. Always consult a doctor.

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What is Myalgic Encephalomyelitis (ME)?

The clinical definition of ME is complicated, and the symptoms are many. It is a "multi-system disorder" that affects a person's immune system, hormones, nervous system, and energy (at the cellular level). I prefer to explain, simply, that it feels like I have the flu. Every single day. This is an oversimplification, but it's often the best way to explain it to a healthy person.

About Me

I came down with ME in June, 2011. I was diagnosed six months later. This blog tracks my progress; my successes and failures along the path to (hopefully) sustained remission.
I live with my wife and two young daughters in Southern California.